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. 2001 Jun 13;285(22):2880-7.
doi: 10.1001/jama.285.22.2880.

End-of-life discussions and preferences among persons with HIV

N S Wenger  1 , D E Kanouse, R L Collins, H Liu, M A Schuster, A L Gifford, S A Bozzette, M F Shapiro
Affiliations

End-of-life discussions and preferences among persons with HIV

N S Wenger et al. JAMA. .

Abstract

Context: Deficits in advance care planning leave many patients and their physicians unprepared for decisions about end-of-life care. Even though the prognosis has improved for many persons with human immunodeficiency virus (HIV) infection, a need for planning remains.

Objective: To evaluate prevalence of end-of-life discussions, use of advance directives, and preferences concerning end-of-life care and their relationship with patient demographics, clinical status, psychosocial variables, and practitioner characteristics among HIV-infected persons.

Design, setting, and patients: Cross-sectional survey of a US probability sample of 2864, which represents 231 400 adults receiving care for HIV, conducted from January 1996 to April 1997.

Main outcome measures: Communication with physician regarding end-of-life issues, completion of an advance directive, preference for aggressiveness of care, and willingness to tolerate future permanent adverse health states.

Results: A total of 1432 patients (50%) discussed some aspect of end-of-life care with their practitioner and 1088 (38%) completed an advance directive. Patients were more likely to complete an advance directive after a physician discussion (odds ratio [OR], 5.82; 95% confidence interval [CI], 4.50-7.52). Practitioners discussed end-of-life care less with blacks (OR, 0.57; 95% CI, 0.39-0.83) and Latinos (OR, 0.74; 95% CI, 0.55-0.98) than with whites. Women (OR, 1.39; 95% CI, 1.05-1.84) and patients with children in the household (OR, 1.53; 95% CI, 1.12-2.10) communicated the most with practitioners about end-of-life issues. Patients infected with HIV via injection drug use (OR, 0.64; 95% CI, 0.45-0.89) and those with less education communicated the least with physicians about end-of-life issues. Less denial, greater trust in one's practitioner, and longer patient-practitioner relationship were associated with more advance care planning.

Conclusions: Half of all persons infected with HIV are at risk of making end-of-life decisions without prior discussions with their health care practitioners. Blacks, Latinos, intravenous drug users, and less educated individuals need advance care planning interventions in clinical HIV programs.

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